A Lifetime with IBD

About 1972 (27yrs old) mother of 2, was told by my MD that I had Proctitis and should not do stool tests as there would always be blood in it. There was no internet and so knew very little about it. Wasn’t sent to specialist either so drifted along having changing symptoms and not recognizing them as part do this disease. I would have stomach flu ( I thought) 3-4 times a year (saliva, vomiting, diarrhea, bloody mucus stools. This went on for years. Over the 40 years the symptoms morphed or changed and since I was told very little about it I wasn’t able to recognize that it was all the same disease. I have spent my life thinking that if you had diarrhea you also had vomiting. Who knew, nobody talked about it..it involved your bowels and feces euch! About 1985 I developed incredible gassy, bloody mucus, diarrhea 20-30 times daily. Was prescribed (for the first time), SALOFALK ENEMAS which I used for a couple of weeks and then stopped…was fin e. These reoccurred and I used the enemas for a few weeks then stopped. SYMPTOM CHANGE…I saw Proctologists (that what they called them back then). But no education.

Ann’s Hobbies:

Loves Genealogy, reading, love movies, swim in condos indoor pool all year. Walking the Ambleside sea wall. Shopping, but only as a blood sport! ( searching out best deals for lowest prices).

the Ambleside sea where Ann likes to walk:)

Ulcerative Colitis Symptoms She has Dealt/Dealing with:

A major flare up started in Oct 2014 (never took pills regularly before). On them I have 4/5 ok bms daily with DIARRHEA every 10-12 days. In last few months the flares days have become more frequent at 5-7 monthly. It’s Sept 21 and I’ve had 7 already. So averaging a flare every 3 days which leaves me 2 days to get over the fatigue and exhaustion before the next one comes along. On top of that, my MD and GASTRO think all I really need is the enemas even though whenever I have tried to reduce 1 800 mg ASACOL I can only go about 2 days before the DIARRHE increases even more. Oh, and I have a really sore ass from using enemas EVERY NIGHT FOR ALMOST 3 YEARS!( in spite of the Vaseline).

Ann’s Story: A Lifetime with IBD

On August 2 I started new med for GERD caller pantoprazole 40 mg. to treat spasms in my esophagus, and it worked. But the increase in flares started about two weeks after I started it. Has anyone had any experience with drug? Has it causied Diarrhea?

have very droopy eyelids which have been checked out and apparently qualify for correction under BC medical insurance. I have to stop the meds for 10 days before surgery. I figure I will have to do it before the surgical date to see if I can manage it (or am unable to move 5 feet from the bathroom). I’ve read a number of times that when you stop meds that have been working for you…they may not work when you go back on them. Does anyone have any experience with this?

Auto-Immune Diseases:

Rheumatic fever at age 5…rheumatic heart disease

Idiopathic thrombectic purpura (ITP) platelets at 0) Started with 80 mg of prednisone to shut down immune system then spent 8 months slowly weining off it. Since they don’t know what causes iITPmy dr says that I am in remission…but can not take NSAIDS….so I live in fear that the ASACOL or Enemas will trigger a relapse

So, I’ve been a widow for 8 1/2 years now. I have little stress in my life, have no financial worries. But in spite of this blasted disease I am still overweight (how I don’t know).

I try to be upfront about IBD cause it’s not something to whisper about just because it’s your butt. Whenever the subject comes up, I’m told, but you look healthy (they ought to see me in the middle of a flare). And asked can you do xxxxx, my answer is I’m well, til I’m not well and I don’t know if I can do anything until it happens. IT is definitely a frustrating disease!

Some final thoughts from Ann:

I have never found any specific food triggers. Or beer or wine. I drink diet pop. NO CAFFINE and only one decaf tea daily.
I have found if I’m out and have a large meal I am more likely to have a flare up, so small meals are better

written by Ann

submitted in the colitis venting area

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About Ann Gillespie

My name is Ann, I was born in Belfast Northern Ireland, immigrated to Canada at age 8. Have always had trouble with my bowels...severe constipation OR diarrhea .

Yes but In remission for years.I do not take NSAIDS as they contain blood thinners. Had about 35 platlet transfusions. Started prednisone at 80 mg on Sept 26 2002 and gradually reduced it until I finished in May 2003.

I discovered my low platelet count in a routine CBC in 2002. I don’t understand what is ‘remission’ and ‘active’ in ITP. Since then, whenever I checked my count it has always been between 10000 and 40000. I guess if your count is not at a normal level, you are an active ITP person. I have never tried any allopathic treatment but tried homeopathy, it was of no avail.

Recent Reviews

I am a Mom of a teeneager diagnosed wit UC and when I was searching for common ground,comfort and the real story this was it! I haven't finished the book but I have already taken away suggestions for my son's care and utilized them. So that was worth already the cost of the book and recipes. Thank you Adam and I will review again, I am sure positive, when I have time to finish reading and applying!

I found Adam’s book to be very information on about having UC. I am a mom of a UCer but I also have digestive issues. It can be overwhelming at times and Adams book brought me hope. I highly recommend it as a book to help you find your way through it.

Thank you for sharing your story and journey to remission Adam. I am integrating some of your ideas and asking more questions of my health care practitioners to get on my own path to remission faster. Also, the immediate changes I made in my diet has been encouraging to alleviate some symptoms.

Thank you again. I look forward to the next iteration of your cook book.

What an amazing resource. It definitely opened my eyes to the world of UC. I love how realistic Adam was about all the different treatments, and the details of the struggles to get to remission. While it definitely wasn’t what I wanted to hear (I think we can all agree it would be nice if we could just wake up and feel better), it was definitely comforting to know I’m not the only one struggling hardcore to get to remission so that I can hopefully control my pancolitis with lifestyle and not medications eventually. The book had me laughing at times and in tears from being able to relate to the struggles. Thank you so much for writing this book. It’s been such a valuable resource in so many ways, including helping me learn ways to share information so my family and friends can have a better understanding of what it’s like. So again, thank you for this Adam. It is a must read for anyone struggling to gather as much information as possible.

I honestly felt like you wrote my biography. I've lived my life the same way you did, eating, drinking and partying without having to worry. I did have signs along the way as well but didn't take to much notice to it until the blood showed up. I was diagnosed in October 2016 and at the time my GI told me it had nothing to do with my diet, so I lived my life the same way I always did. I've been trying many different meds without little or no results. After my 29th birthday in June 2017 I started feeling more sick and the weight loss had started, I've always been a skinny guy and ever since I lost quiet a bit of weight which has been something that just makes me feel more uncomfortable. I consulted a Homeopath in October 2017 and she started me on the Paleo diet, while researching that I came across your site and the SCD diet which I started in December 2017. I didn't do any of the diets a 100%, but I did start seeing results. I went a bit off the rails during the festive season while traveling but I'm easing into the SCD diet again and plan on going 100% this weekend. UC has caused a lot of stress for me but I've come to accept it and look at it in a positive way. My goal is to eat healthy, put some weight back on and start living a normal life again. I haven't let UC stop me from living my life although it has limited me, but thats all going to change! Thank you for sharing your story and being an inspiration to all of us.